USMD-PKU.org
NEWS
Event Update from St. Louis, MO: Please email Jessica for more information on MO events.
Event Update from Houston, TX: Please email Judy for more information on TX events.
Event Update from Mableton, GA: Ultimate Frisbee Tournament for PKU, May 10, Whitefield Academy
The first annual ultimate frisbee tournament for PKU was a great success! Event activities included ultimate frisbee games, a concession stand (stocked with free low-protein food samples), a moonwalk, crafts, and tents for relaxing and meeting new friends! The members of the PKU Georgia Support Group want to extend their appreciation to our wonderful sponsors! Thank you USMD, BioMarin, Vitaflo, Nutricia, ENER-G, Cambrooke Foods, Trader Joes, Best Buy, Georgia Natural Gas, Tupperware Consultant Ali Cochran, AT&T and Emory Genetics! We also received a great deal of help from the Lee Family and Golden Buddha Restaurants! We look forward to another great day of fun and fellowship in 2009! (For more information on GA support, email kristen.usmd@gmail.com)
We plan to have some great events in 2008 to support PKU Across the Country...please see our activities page for details.
USMD response to membership in NPKUA:
Unified to Support Metabolic Disorders (USMD) is a non-profit focused on improving the lives of individuals with PKU through advocacy, education, support, awareness, and collaboration with IEM support organizations across the country. The National PKU Alliance (NPKUA) formed in early 2008 and is working towards unifying state and regional PKU organizations to work on issues of national interest. While USMD is very supportive of the NPKUA and their mission, we are not seeking membership at this time as we feel that becoming a member organization requires a significant portion of our funds to be sent to NPKUA. USMD is currently working with local event leaders, metabolic clinics, the Southeastern Regional Genetics Group and the Society for Inherited Metabolic Disorders to identify projects in need of financial support. These include, but are not limited to, camps, educational scholarships, research and patient support registries, and local events. It is USMD’s hope that the National PKU Alliance is a great success. USMD will follow the NPKUA’s progress and may request membership at a future date.
Please feel free to contact USMD at usmd.info@gmail.com with any questions.